Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK: a longitudinal study
Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK: a longitudinal study
Objective: to explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved.
Design: online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted.
Setting: online.
Participants: parents/caregivers of children with cancer.
Results: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents’/caregivers’ worry about the virus and vigilance about their child’s virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19.
Conclusions: the COVID-19 pandemic disrupted people’s lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers.
Collaço, Nicole
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Gamble, Ashley
76120cfc-2d5c-475d-9d47-1db0e3fc1a44
Morgan, Jessica Elizabeth
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Phillips, Bob
11d4e5d1-e11f-4e9c-a9f2-8107e0f3e59d
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Darlington, Anne-sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Collaço, Nicole
d7a41227-8aa4-4bbb-a380-980824736945
Gamble, Ashley
76120cfc-2d5c-475d-9d47-1db0e3fc1a44
Morgan, Jessica Elizabeth
4d3970f3-490f-4ff7-8abc-7d54a08f3e37
Phillips, Bob
11d4e5d1-e11f-4e9c-a9f2-8107e0f3e59d
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Darlington, Anne-sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Collaço, Nicole, Gamble, Ashley, Morgan, Jessica Elizabeth, Phillips, Bob, Culliford, David and Darlington, Anne-sophie
(2022)
Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK: a longitudinal study.
Archives of Disease in Childhood, 108 (3).
(doi:10.1136/archdischild-2022-324905).
Abstract
Objective: to explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved.
Design: online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted.
Setting: online.
Participants: parents/caregivers of children with cancer.
Results: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents’/caregivers’ worry about the virus and vigilance about their child’s virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19.
Conclusions: the COVID-19 pandemic disrupted people’s lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers.
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Accepted/In Press date: 21 November 2022
e-pub ahead of print date: 30 November 2022
Identifiers
Local EPrints ID: 474344
URI: http://eprints.soton.ac.uk/id/eprint/474344
ISSN: 0003-9888
PURE UUID: 403286e4-69fa-4a78-9e6e-89061c31880e
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Date deposited: 20 Feb 2023 17:54
Last modified: 17 Mar 2024 03:55
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Author:
Ashley Gamble
Author:
Jessica Elizabeth Morgan
Author:
Bob Phillips
Author:
David Culliford
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